Carolyn returns to Toronto – 家宜暫返多倫多

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採訪、攝影:陸君樂
圖片提供:譚家誼

原定於今天(12月20日)在美國巴爾的摩(Baltimore)John Hopkins醫院,接受弟弟骨髓的血癌患者譚家誼,因為身體狀況不適宜進行移植,最後需要折返多倫多,目前仍未知下一步有什麼選擇。

本刊曾嘗試聯絡家誼,但她表示現階段並未準備接受訪問,但亦多謝傳媒們的關心,並希望透過我們把以下信息傳遞開去:
……我希望這次報導不只是交代我的最新情況,但亦再次提醒公眾,骨髓移植只限於同一族群,希望大家不只是看我的故事,更會透過登記成為骨髓捐助人來支持亞裔血癌病患者。

過去兩周我們在John Hopkins做了數個移植前的檢查和測試,他們發現我的骨髓內仍然有癌細胞的跡象,加上我的Blood Level不斷下降,令我不能進行Non-myeloablative Haplo Transplant。

現時我們還未知道下一步應該怎樣走……我是否又要做化療?我的心臟是否太弱,連標準的骨髓移植都不能做?如果我需要再次落美國做移植或其他手術,OHIP又會否繼續負責其開支?

眼前雖然仍有很多不明確因素,但我們一家亦因大家的支持而十分感動,亦因此有力量繼續走下去。

 

………it is important to me that the next report is not just an update on my situation, but to remind the public again, that marrow transplant is limited within one’s ethnic group, and I hope that people will not just read our story but support all Asian leukemia patients, now and in the future, by Taking Action and registering to be a marrow donor right away.
 
We spent the past 2 weeks at Johns Hopkins doing various pre-transplant testings, through which they found traces of leukemia cells in my marrow, plus my blood levels have been dropping consistently, which rendered me ineligible for the Non-myeloablative Haplo Transplant. 
 
At this point, we really don’t know what the next steps are – Do I need more chemo? Has my heart become too weak for standard Myeloablative Haplo Transplant?  Will OHIP still cover me if another hospital in the States would take my case?

There are a lot of unknowns right now, although my family and I are very touched by all the well wishes we have received and will continue to draw strength from the support from the community. 

 

 

Thank you and Take care,
Carolyn

 

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

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Carolyn off to US for transplant – 家宜赴美求醫

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採訪、攝影:陸君樂
圖片提供:明報資料室

當你閱讀這篇訪問時,多倫多血癌患者譚家宜(Carolyn)已經和家人身在美國巴爾的摩(Baltimore),準備12月20日,在John Hopkins醫院接受弟弟的骨髓移植。去年這種移植手術在同一所醫院的成功率達97%,但家宜仍需留院觀察3個月,最壞的情況便是出現排斥,家宜便會內臟衰竭。
但在John Hopkins醫院進行移植前,家宜亦要再做五日化療和一日電療,確保體內沒有癌細胞。「所以這幾個月『有得食好食』,因為做完(化療及電療)多數會發燒、感染,一定有段時間無胃口。」
 

她坦承害怕死亡,不過亦沒有去想太多,而且在這大半年,她已經經歷過不少人的關心,特別是自4月以來,多倫多、溫哥華及香港等社區不少人都為她奔走呼籲,這是很多人亦沒有機會經歷的。如果過了這一關,她亦計劃成立基金及參與癌症知識宣傳工作回饋社會。

在記者前的家宜看來精神奕奕,但其實由今年4月至今,她又已做了3次化療,最輕時5呎6吋的她只剩105磅。

血癌有如計時炸彈
「對上一次(化療)是九月中,現在精神好了些,但感覺到身體比以前弱了。如果一天找不到合適的骨髓作移植,根據醫生的意見,血癌是永遠有機會復發,就如計時炸彈,所以美國此行是冇得選擇的。但我在Princess Margaret醫院的主診醫生幫我爭取到OHIP的資助,因為在加拿大做不到同類型手術。不過其實這不算手術,因為毋須開刀。」

John Hopkins醫院自2003年開始為血癌病人做這種幹細胞或骨髓移植,平均成功率達八成半,去年更達97%。「弟弟的和我的骨髓配對率雖然只有五成,但院方會配以藥物等技術來提高成功率。不過移植後三個月都需要留院觀察,因為如果有排斥通常會很快便出現,最壞的情況是我的內臟器官不接受弟弟的幹細胞,那時我便可能因腎或肝衰竭而死。」

超市職員亦問候
家宜亦坦言會驚最壞的情況出現,「但不會去想,亦沒有計劃這些『如果』出現怎麼辦,因為有太多可能的情況,如果去諗這些事情是諗不完的。」雖然目前仍未找到與自己配合的骨髓,移植後亦有一定風險,但家宜從沒有怨天尤人,「這樣說可能很老土,但這幾個月我覺得很感恩(blessed),因為唔出事唔知咁多人關心自己。

「例如早前落John Hopkins做檢查,有個好朋友,Susanna專程從溫哥華飛過來陪我和媽咪一起駕車落去,驚我駕車太久太累。當然最多謝我的媽媽和弟弟,但亦有很多auntie、uncle,甚至我媽咪早前去超市買肉,都有職員向她問起我的情況。另外,One Match(加拿大的幹細胞及骨髓資料庫)現在終於有中文版,亦多得王裕佳醫生的據理力爭,這將不止幫助我一個,亦會幫助到更多其他有需要的病人。」

雖然這次南下有OHIP保險,但只包醫唔包藥,「其實就如在加拿大做手術一般,只要是醫生寫紙開的藥都要另外購買,當然不會包其他開支如住宿或弟弟的機票。」由如現時經濟環境不佳,在香港工作的弟弟亦沒有申請假期,只是連續兩個周末飛往巴爾的摩,第一次(這個周末)為了驗身,19日的周末則是為了做幹細胞移植。記者即時想到的是合共近$3000的兩張港美來回機票,但家宜的反應卻是體貼弟弟的健康,「咁飛法,很傷身。」

短期柏文坐地起價
原來巴爾的摩因為有John Hopkins這所名醫院,不少人前來求診,所以短期租屋的市場亦坐地起價,完全無價講,家宜她們在那裏租一個已裝修的柏文四個月便需要$16000(加幣)。

「如果發燒或感染,需要買藥物,例如抗生素,OHIP亦唔包,而我每次做完化療都會有這些情況出現,因為白血球會降到零,抵抗力全無,所以難以估計這方面的開支。如果在多倫多買那些藥,大約每個月$7000。說實話,現在我張張信用卡已『碌爆』。」由於治病所費不輕,所以www.savecarolyn.com 網頁最近都增加了一個捐款欄。

「可能不少人都會覺得我好慘,但我經歷過這麼多別人的關心,相信很多人亦沒有機會經歷,我已經覺得很幸福。而且在4月之後,不少教會亦致電給我們,說會為我們祈禱,亦有朋友帶我們去佛堂。6月的募捐亦籌得25萬,One Match亦多了3000多個樣本,這些事情都令我十分感動。」

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Dim Sum (UK) – Could you save Carolyn’s life?

Could you save Carolyn’s life?

Monday, 21 July 2008
On a normal Monday in November 2006 Carolyn Tam went for a routine annual check-up. She had the usual blood tests and then carried on with her day-to-day life. However within three days her doctor was calling her, telling her to come back to the hospital the next morning and to go straight to the emergency room if she felt nauseous. As a healthy young woman her initial reaction was “why?!” She told friends not to worry as she could cope with anything as long as it wasn’t cancer.     

It was.  

The following morning, after more tests, Carolyn was diagnosed with acute myeloid leukaemia. Like most of us, she admits she wasn’t entirely aware of what this meant or the diseases’ symptoms. She describes the moment on her website “it sounds stupid now, but it didn’t even register with me that Princess Margaret is a cancer hospital. Then the doctor had just told me that I had cancer. I mean, this all happened within 3 days! It wasn’t until I went to the internet after the phone call that I started to freak out… I was afraid I would just die in my sleep that night.”  

Carolyn went on to fight against her cancer through various treatments, including chemotherapy, leading to her leukaemia going into remission, but this April she was told the leukaemia had resurfaced and this time she need a bone marrow transplant.  

The terrible thing about a bone marrow transplant is that your own family members have a 70% chance of not being a suitable donor, so a sufferer’s search usually has to be broadened. Worldwide about 12 million people are registered on various databases as being possible bone marrow donors, of which approximately 1million are of Chinese ethnicity.  

A match in ethnicity gives the donor a better chance of being a match, especially those with the surname Tam or Lau. So of course straightaway Carolyn’s doctor went to search family records and the world database. There was no match. This spurred Carolyn’s family into action, her mother and brother immediately flew to her home in Canada from Hong Kong. Then the search began in earnest, to look for a suitable donor who could save Carolyn’s life. 

She and her mother have been canvassing her current home, Canada whereas her brother has taken on the formidable task of informing the rest of the world. I spoke to him in Hong Kong about his main resource for searching for a donor,www.savecarolyn.com. “Now I’m looking at this globally. Sure we can focus on how many people proportionately are registered in each country, but I’m focusing on getting as many people as possible registered in the world.” 

As we know, Patrick has a higher probability of finding a match within the Chinese community so he has concentrated his search there. Nevertheless, the poor response has surprised him, yet the case has been well publicised in Canada.  

“Here in Hong Kong it’s a more Chinese dominated society so people are seemingly more indifferent. I would imagine in Hong Kong there are more Chinese people so we would get a better response, but so far this is not the case.”  

Patrick even has some local celebrities backing his campaign, including Sammi Cheng and Karen Mok, but still the response has been lukewarm. The situation is similar in the UK with the Chinese registry rate being significantly lower proportionately than the amount of Chinese people in the country. According to the Anthony Nolan trust of the 395,000 people registered, only 1156 are of Oriental ethnicity.  

Despite this Patrick refuses to be negative: “the overseas Chinese in the UK can play a big role in raising awareness in the Chinese community. We just need one match, nothing more”. Also in the UK there is a restriction on giving blood if you are only living in the UK for a certain period, however this does not apply to potential bone marrow donors.

When you speak to Patrick you can feel the determination emanating from the man and I wanted to know how he manages to stay positive. “From the first day of this website we realised this isn’t just about Carolyn now, it’s about anyone in need. By expanding the worldwide register we might be saving someone else’s life today. I’ve learned a lot, and what we realised by doing this website is that there is actually a lot of love in this world. There are so many people who have extended their helping hand, sometimes you think they may care more than you do.” 

Nevertheless Patrick remains realistic because, more increasingly, time is of the essence. According to the Hong Kong Red Cross, a patient with a common type of tissue has a 1 in 2000 chance of finding a match. Yet a patient with rare tissue has only a 1 in 100,000 chance of finding a match. Unfortunately Carolyn has a rare tissue type, therefore this means that the search for a donor takes on even greater importance.  

As a result Patrick and Dimsum now call on the Chinese community to take action and join the registry list. Patrick confessed “We recently celebrated Carolyn’s birthday with her in Canada. We don’t like to say it but part of us is fearful it might be her last. This is why our work is so important now. To be honest we don’t mind if people don’t know how we feel, all we want is people to take action and get registered.” 

To get registered or involved, click here or call 020 7284 123 
Get registered, get a friend to get registered or organise a local drive – anything will help.

Dimsum also highlighted Kitty Cheung’s search for a donor in 2004. For further information, please visithttp://www.anthonynolan.org.uk/ or http://www.savecarolyn.com/ , as you could save a life today.

香港明報週刊

岑建勳發起募捐骨髓行動

救救加國港人譚家宜

三十八歲的香港移民譚家宜(Carolyn),在 加拿大的華人社區可謂無人不曉,一言一行牽動了眾人的心;為了延續她的生命,早前分別在溫哥華與多倫多設立的骨髓募捐登記站內外迫滿人龍,一家大小不介意輪候多時,加拿大血液服務中心的數據顯示,華人捐贈者一時激增七倍之多!

  Carolyn不幸罹患血癌,生命危在旦夕,境況固然值得同情,但除了憐惜與不忍,應該還有更多值得關注的理由吧?在為她而設的http://www.savecarolyn.com網站,我看到病者的堅持、對生命的熱忱、顧己及人的「大愛」精神。「不單為了姊姊,也為了有同樣病患的家庭,我們一定會繼續,呼籲更多的捐贈者支持!」Carolyn的弟弟譚家強(Patrick)以篤定眼神,許下承諾。

  這股人間暖流,在九一年的「救救小哥頓運動」,曾經傳遍香江;十七年後,因譚家宜而發起的「救救家宜.全球募捐骨髓行動」,可會歷史重演,成就另一次動人的「大愛」?

建勳是救救小哥頓運動的發起人之一,當年一呼萬應,超過一萬三千人響應驗血,全球首個華人骨髓資料庫,就此應運而生。最近,有位國內小朋友,在台灣找到合適骨髓,再於瑪麗醫院手術成功,中港台的歷史性合作,感覺好touching!自己沒有什麼付出,但可以拯救一條生命,是很厲害的一回事!今番為了譚家宜重操故業,阿John希望找個有心、擁有正面形象的女藝人加入呼籲的行列,剎那間,腦海浮現了莫文蔚的倩影。Karen的媽咪︵莫何敏儀︶一直為兒童癌病基金出力,她會是一個很合適的人選,便跟Patrick提起,他竟然說:﹃她們是同學呀!﹄﹂冥冥中自有主宰,Karen緩緩道來:﹁我跟Carolyn從小學開始認識,是從小玩到大的同學!我們一班拔萃女生感情好好,最初有人談起這件事,我完全不敢相信,再追問下去,原來她的癌症已經復發,大家都很緊張,我立即在自己的blog作出呼籲,又連結了Carolyn的網站,但始終效力有限,正苦思如何讓更多人知道她的情況,岑建勳的電話便到了!﹂Karen曾跟Carolyn通過電郵,從文字容或流露絲絲擔憂,但態度仍是正面、達觀,更堅強地勸Karen不要替她憂心。﹁反而我們這班同學更﹃渣﹄,只要談起她,便難忍淚水!﹂Carolyn成長於單親家庭,跟母親及弟弟感情深厚,八八年移民多倫多,本在一間建築公司擔任項目經理, 六年十一月一次普通身體檢查,初次發現血癌的麟爪,猶幸在未有任何徵兆下及時驗出,經過半年深切治療,醫生初步認定Carolyn體內的癌細胞已被殲滅,甫踏出醫院的第一天,呼吸健康空氣的她,已急不及待要幫助他人,Patrick說:﹁她坐在咖啡室,看到一張呼籲大家參與馬拉松的海報,那是為血癌治療基金籌募經費的慈善活動,最巧合的是,海報上有個女人,名字居然也是叫做Carol!姊姊當下便說:﹃我一定要參加!﹄﹂大病初癒的Carolyn坐言起行,不但順利跑畢馬拉松,籌得一萬五千加元,更當眾發表演說,希望外間多加關注血癌病人;當時Carolyn對媽媽如是說:﹁我取之於社會,應該回饋社會!﹂

忘不了那個早上

上天可是有心一再試煉她的意志? 八年四月四日,她接獲通知,癌魔回歸了!Patrick忘不了那個痛心的早上:﹁當天,媽媽正準備從香港飛往溫哥華,住在舅父家玩兩、三個月,順道慶祝七號的生日,誰知早上姊姊來電告之壞消息,我起,望媽媽,到底說還是不說?我唯有望媽媽,說:﹃你玩得開心一些,enjoy yourself!﹄姊姊也照原定計劃,從多倫多飛往溫哥華,待慶祝日過後,姊姊才拉媽媽到一角……﹂譚媽媽一手湊大兩姊弟,天生﹁煮到就食﹂的樂觀個性,以為女兒終於康復,打算退休享受人生……﹁她怎樣樂觀,那一刻,還是忍不住哭了!﹂哀病魔無情,也為女兒之體貼而動容──Carolyn刻意隱瞞病情,讓媽媽擁有多一個快樂生辰。

三口之家再次披甲奮戰病魔,情緒難免時有起伏。有時候,她會抖擻精神:﹁媽媽,血癌只是我生命裏的一段插曲,我會康復的,不要為我擔憂!﹂但經過不斷的化療,虛弱的她又會累倒上:﹁媽媽,我的腦部會否受藥物破壞,以至就算康復,我卻不能認出你和弟弟呢?﹂可幸的是,她從沒有鑽進﹁何必偏偏選中我﹂的死胡同,在抗癌的過程中,她感受到無微不至、無處不在的愛。﹁很多之前不認識我們的人,都願意花時間去支持這件事,願意驗血捐贈骨髓,有一位朋友更哭對她說:﹃多謝你給我這個機會,不知道如何解釋,總之這是我必須要做的事!﹄讓姊姊覺得:﹃我做到了!﹄﹂在加拿大舉行的募捐骨髓行動,反應極之熱烈,為血癌病人帶來新希望,只是可喜亦可悲,跟Carolyn吻合的捐贈者尚未現身,主診醫生更指化療已不可能治癒她的病,現階段所做到的,只為了她將來接受骨髓移植手術作準備。﹁我的心臟、肺部及腎臟,能經得起再一次的化療,能抵受藥物的毒性嗎?﹂Patrick自然知道,姊姊的病況已是刻不容緩,如果七月底前仍找不到合適的捐贈者,迫於無奈之下,醫生便要利用譚媽媽或Patrick的骨髓,替Carolyn進行一次極高風險的手術。﹁好像是有個後,但我上網一看,原來這個手術好實驗性,三十多個病人,可能只得十數個生存!我和媽媽始終不是完全吻合的捐贈者,半桶水被推入手術室,可想而知風險有多大!﹂血緣愈近,吻合程度自然愈高。募捐骨髓行動來到香港站,譚詠麟與劉千石已響應岑建勳的號召,分頭呼籲姓譚及姓劉︵譚媽媽本姓劉︶的人士驗血,若閣下籍貫為廣東雲浮或客家興寧,亦請踴躍參與捐贈行,Carolyn及其他血癌病人的續命天使,可能是你!︵當然,其他籍貫及姓氏者,亦無任歡迎!︶

給他們一個希望

  香港紅十字會輸血服務中心,一直呼籲港人成為骨髓登記者,給所有患上血癌或致命血病者,多一個成功配對的機會。「登記者要身體健康,年齡介乎十八歲至六十歲,合乎資格的人,會被抽取約五毫升的血液樣本,過程並無痛楚!」紅十字會輸血服務中心的李卓廣醫生表示,抽取樣本後再經電腦配對,初步吻合後,捐贈者需要接受第二輪驗血,確定與病人的白血球組織型高度或完全吻合,才會進行移植手術,否則一旦出現排斥,病人的性命堪虞!

  生命到底可以有多重?你的付出,輕於鴻毛,她的得,重於泰山!有心人可隨時到香港紅十字會輸血服務中心的固定捐血站,登記成為骨髓捐贈者,亦可在七月十二日,親身到沙田新城市廣場支持募捐骨髓行動(暫定),給Carolyn及其他血癌病人一個生存希望。

  朝向光明,沿途有你

無痛捐骨髓 母親節最好禮物

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